Frequently asked questions

In the following you will find a list of frequently asked questions (FAQs) and answers on European Standards of Care for Newborn Health.

More information about the project is also available in the project report.

What is the vision and mission of the project?

The vision behind the project is that all babies receive the best possible treatment and care, no matter where in Europe they are born. Currently, care and treatment practices of preterm and ill infants differ between European countries and even between hospitals within the same country. Within this project, European reference standards for the care of preterm and ill infants were developed. In the long run, the project´s mission is to ensure equitable and high levels of care throughout Europe by facilitating and harmonising neonatal care and its neighbouring medical areas

What are the aims of the project?

The European Standards of Care for Newborn Health project aims to address the disparities in provision and quality of care existing in Europe by developing a comprehensive set of reference standards, which are covering the most important topics associated with preterm birth and neonatal morbidity. These European standards are intended to be used as a source for a national development of respective binding and implemented guidelines, protocols, or laws (depending on the national and local situation).

Who is involved in the project?

A group of about 220 interdisciplinary experts, including healthcare experts from e.g. obstetrics, neonatology, paediatrics, nursery, midwifery, and psychology, as well as other experts (e.g. architects) and patient representatives from more than 30 countries committed to the project and dedicated their free time to work on the project. Through its multi-stakeholder approach, the perspective of parents, healthcare professionals, and relevant third parties were equally considered. Industry partners were involved in the project by supporting it financially. Their representatives could join the Chair Committee meetings in an observing role.

Which topics are covered in the standards?

Within the project, neonatal care was divided into eleven overarching topics (11 Topic Expert Groups) in order to cover the most important topics associated with preterm birth and neonatal morbidity. Within each Topic Expert Group (TEG), several standards were developed. The standards include topics around birth and transfer, cover the time in the NICU, and continue until after discharge into early childhood. Also challenging issues like ethical decision-making and palliative care are addressed in one Topic Expert Group. You can find an overview of all topics here: Topics

How were the standards developed?

The standards were developed in a peer review process, involving about 220 interdisciplinary experts from all over the world. Here you can find a graphic that illustrates the complex development process of the different standards starting with the decision on the standard topics until their official launch, and goes even beyond their launch, including the planned life-cycle of the standards and extension of the standard topics: Methods

What is the Topic Expert Group?

Each of the 11 key areas (topics) is assigned to one Topic Expert Group (TEG), the project’s thematic transdisciplinary working and writing groups that develop the respective standards related to each topic. Every TEG consists of several members (experts from different disciplines and parent representatives) and is led by a Chair Team.

What is the Chair Committee?

The Chair Committee is the central decision-making body of the project. It consists of 36 members: 25 Chairs of the different TEGs, eight members of the EFCNI’s Parent Advisory Board and the three EFCNI Executive Board members. Between 2015-2018, the Chair Committee met annually for important consultations, discussions, and decisions. Decisions that needed to be taken in between were discussed virtually and taken by online surveys. The Chair Committee steered the project, defined the project objectives, its design and methodology, developed the standard template, decided on the issues for standardisation and their prioritisation, as well as discussed and voted on the developed standards.

Are the standards only available in English and can we translate them to our native language?

The European reference standards are originally published in English. As the local situation is different in each country, the standards cannot be simply translated word by word but need to be adapted to the local circumstances. Nevertheless, having the standards only available in English is a major language barrier that impairs the national implementation of the standards. Therefore, first approaches in translating parts of the standards are ongoing: the information brochure on the standards which summarises the project and gives an overview about the standards is already available in English, Bulgarian, German and Greek and are available for download. This brochure can be used to get an overview of the standards and facilitates the prioritisation process, of which standards should be implemented first on a national level. Once this prioritisation has happened, selected standards might be considered for translation into local languages.

If you are interested in a translation of certain documents, please get in touch with us.

How is the project funded?

The project is financially supported by the project industry partners AbbVie, Baxter, Nestlé Nutrition Institute, Philips Avent, Philips, and Takeda. Dräger was a project partner from 2013 till 2015 and Shire from 2014 till 2018.

What is the definition of Europe in the project?

Within the European Standards of Care for Newborn Health project, a geographical definition of Europe is used instead of a limitation of Europe to the EU member countries.

When were the standards launched?

The initial set of standards (96 standards) were launched in a workshop entitled “Mission: possible – Take responsibility for newborn health in Europe.” in the European Parliament in Brussels on 28 November 2018. More than 100 politicians, the project’s experts and supporters, parent representatives, as well as several key stakeholders and speakers from organisations like the World Health Organization (WHO) joined the launch event. Find more information about the launch event here.

How are parents involved in the project?

The European Standards of Care for Newborn Health project was initiated and coordinated by EFCNI, a European umbrella parent organisation. Including European parent representatives as equal partners from the beginning in the project’ s work, the parental voice and perspective regarding the care and treatment of preterm babies, significantly influenced the project and its objectives. Parent representatives are actively involved in all stages of the project: Representatives of parent organisations are members in the Topic Expert Groups, and thus are directly involved in drafting the standards. A Parents’ Knowledge Forum, involving parent representatives from the whole world, was established, which can be consulted by all topic expert groups on specific questions. Also, eight parent representatives are part of the Chair Committee, the decision-making body of the project. They are full members of the Chair Committee and have voting rights. In total, more than 50 parent organisations from all around the world are in the meanwhile supporting the standards with their logo.

Why are parent representatives and parent organisations involved in the project?

Parent organisations bundle the knowledge and experience of parents and other close relatives and are involved to represent the families of preterm and ill born children. They know what it means if a baby is born preterm or is ill. From their own experiences and the experiences of the families they work with, they have acquired a wealth of knowledge about life in the neonatal intensive care unit (NICU) and the challenges after discharge. These experiences are of great importance and add a different perspective that is often overseen to the expertise of the different healthcare professions.

Which organisations support the standards?

Currently, more than 170 healthcare professional societies/organisations and parent organisations support the standards. A list of these organisations is available here.

How do I and my country benefit from supporting the standards?

In the long run, the project´s mission is to ensure equitable and high levels of care throughout Europe by facilitating and harmonising neonatal care and its neighbouring medical areas. By being an official supporter of the standards, you show that your organisation stands behind the content of standards and supports the implementation of the standards in your country. Other organisations from your country might also be supporting the standards. This might facilitate the creation of coalitions with them. Only together, you can push the national implementation forwards.

How can my organisation support the standards?

If your organisation is not already supporting the standards, please consider to join the project as a supporting organisation. In this role, your logo will be displayed as an official partnering organisation and will be included on all future printed as well as digital materials of the European Standards of Care for Newborn Health. To become a supporting organisation, please use the contact form on this website or write an e-mail to us. Have a look at the toolkit, which can be downloaded to get more inspiration of what you can do to support the national implementation process in your country.

Are there any costs involved if we become a supporting organisation?

No, joining the project as a supporting organisation will not cause your organisation any direct costs.

Can we call ourselves supporting organisation or partner organisation?

If you have sent us an official letter of support stating that you support the European Standards of Care for Newborn Health and we have registered this support, you can call yourself a ‘supporting organisation of the EFCNI European Standards of Care for Newborn Health’.

More information needed?

You have a question or query that was not answered here, please contact us.